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Tuesday, May 28, 2013

I really hate that I do not get to write here often. This blog is so very important to me. I'm grateful that I took the time to blog about things that would seem insignificant, because with Hannah gone not a single moment with her seems insignificant now. I can't tell you how comforting it is to get to go back and read over our last few years together. I LOVED being Hannah's mom. Even in the hardest of times she made life with her a joy.

The last few weeks have been very reflective for me. Several things have taken place...

I work with individuals who have disabilities on a daily basis and I love it. It's so much more than a job to me. It has its bad days, but the good ones outnumber the bad ones. Last week part of my job involved me taking a client into three life skills classrooms in three different schools. They call it life skills but it's academic and life skills rolled up in one. I call it "old school". :-) Two of the classrooms were classes Hannah actually attended. The third was the one she would currently be attending if she was still with us. I was a little worried about how this would affect me emotionally being so close to her 12th birthday. It really was good for me however. It felt great to be among people, and in places Hannah loved. I was reminded how loved Hannah was and continues to be. I'm grateful for the experience.

A beautiful little girl passed away from a status seizure last week. She had Dravet syndrome. I watched(through facebook) as her family wrestled with all the things we wrestled with before we had to say bye to Hannah. My heart broke for them and continues to. I couldn't help but think that maybe Hannah would meet her and show her the ropes. :-) Too many families losing their babies to seizures. :-( It's beyond hard.

I was feeling guilty because I didn't think I was doing enough to keep Hannah's memory alive. I haven't started a foundation, have only done small fund raisers for epilepsy awareness, and still haven't written that book I had planned to write. I had a dream that was so real. In my dream I was at a playground and kids were running around like crazy having the time of their life. I found myself desperately looking for Hannah and I couldn't find her in the crowd. I was incredibly sad and feeling like a huge failure. My head was tucked when I heard a familiar voice. It was Hannah. She ran up to me, wrapped her arms around my hips and said, "it's o.k. mommy", and then ran back to play. The "it's o.k. mommy" woke me out of a dead sleep. It was so very real. I wish I could adequately describe it. It just felt like Hannah was letting me off the hook.

So, those are just a few of the things that have taken place and made me really reflect, grieve, and celebrate my life with Hannah. She's been gone over 3 years now. So hard to believe.

On Saturday the boys, David, and I made a trip to the cemetery. Hannah would have been 12 this Thursday, the 30th. I always make a wreath for Hannah's birthday but this year I just haven't been in a place where I could. In February I had a serious episode with my esophagus and it threw me for a loop. I was pretty much useless for a couple of months. Then work got really busy, the semester was coming to a close, and finals were happening. With the stress from all of that, I had a flare up of CFS(chronic fatigue syndrome). Ugh! It was depressing. I am so blessed with wonderful friends though. My fantastic friend Shelley took care of getting a wreath for us to take to Hannah's grave. It was perfect. We usually release balloons for the number of years she would be old. This year I decided to buy four plain balloons, and we each wrote a message to Hannah on them, then released them. It felt right. See the photos below.

After the cemetery we were able to meet some dear friends from the hood for dinner. It was great to catch up with them. They were greatly used by God in our lives at the time of Hannah's passing and continue to bless our lives. Friends are priceless you know! We're so blessed!

Thank you all so much for loving our girl and for loving us! We wouldn't make it without the prayers and support of our friends. You've kept us going in some really hard times. Please continue to keep us in your prayers, and remember that seizures do take lives! Precious beautiful boys and girls! Someone's baby! Love on a family when you hear their child has seizures and remember Hannah! All my Love! Marcey

2 comments:

Marcey. Thanks for sharing. I think of you often and thought of you last week when Clover passed. You are amazing and such a blessing. Your dream with a hug from Hannah, wow! Hope to hug you soon.XoSally

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Hannah's Story

Hannah is a 7 yr old little girl who has epilepsy, autism, mild cerebral palsy, SID, and CLD. She attends school where she is in a special needs classroom. She receives occupational, physical, and speech therapy. Hannah is confined to home a lot due to respiratory illness’s and in the summer due to lack of body temperature control, a side effect of her seizure medication. None of which can keep her down. She's one strong little girl. I think you'll enjoy getting to know her...

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Email from Koolio...(Hannah's service dog)

Hannah, Yoda here with my friend Koolio who wants to speak with you. He is a pretty cool dude that Koolio and you are so lucky he is going to be your partner!

Hey Hannah,

Koolio here! How are ya girl? I am so excited we are partners! I feel like I already know you because I have been getting to know how you smell. I have been working so very hard to be your best friend and help out when you need me. I want to sleep in your room, and even though I am a guy, well you can play dress up with me if you want to and I am sure I can sit through a tea party or two. Whatever you want to do is fine by me. I am just glad to be with you! Hurry up and come here to Ohio because I am waiting for you! Counting the minutes..... xoxoxoxoxoxo Koolio